Completely fed up and over this

Since being diagnosed with eagles life sucks I was never told what type I have or if any of this is related to my eagles but for months now they had said I have vertigo and do not know what’s causing it I have had ct multiple blood work and metabolic pannels they have also mentioned stroke as I am off balance and find it hard to walk I feel like I’m on a boat in my neck feels like its shaking and just feel terrible no answers and no clue if eagles is doing this I want to be able to walk again normal with out having to grab onto something sigh anyways I’m complaining but I needed to vent :frowning:


I just had my right styloid removed by Dr. John Milligan in AZ last Wednesday. I am not sure if you are still looking for someone in AZ. I am in a lot of pain but very hopeful. He is very familiar with ES. I hope 2 weeks from now I will be a lot better. I had my spine fused 3 months ago, I am sure having surgeries back to back has made it more painful for me to recover.

When I feel better I will go through and find others here in AZ and post on their page about Dr. Milligan. being on the computer Hurts a lot.

Hi Tish,

I was told I had traditional eagles of my right stylloid about one year ago. But I have been dealing with tinnitus and dizzy spells for over five years. That makes me wonder if the bone presses off and on the blood vessels to cause this. Believe me, I have been diagnosed with a slew of things about this dizzy factor during that five year spell. It was always a Vestibular and inner ear problem they told me. I did numerous treatments and therapy sessions for that and no improvement. I am having surgery in Pittsburgh this Thursday. No telling what the surgeon will find because I know for a fact that things don't always show up the way they are in MRI's or 3-D CT Scans. I will be posting on the aftermath of my surgery when I can. I wish you the best of luck in finding the answer to your problem. I hope I get some improvement on my dizziness after the surgery so that I can tell you for sure if eagle's played a role in my situation. Take care!

With Kind Regards,


It might be compressing something I’m hoping Ent gets this diesease seems like Dr d

Dr don’t want to spend the time on are condition after the office visit

Thanks viperbone and deleone at this point I have seen many doctors and been to many er rooms ct and blood pannels normal. My neckalways hurts as I was in a car accident and now it curves forward a newish symptoms is now my hands hurt and turn white and stiff .any doctor I have told that I have eagles brushes it off like its nothing I hate doctors at this point if its pressing on something how could they find out ? And I hope u find some type of relief :slight_smile: thanks you

Today is another day confined to my bed I can’t get up becausr my head starts moving internally diagnosed as vertigo. I feel week and like I’m going to pass out or fall over gahhhh

It’s not complaining to us it’s really hard to relate to anyone without this disease I’m starting to feel alienated ,the bone can compress arterys specially the carotid artery which runs along the styoid not sure if I spelled that right I get the creeps when I’m in a Dr office now know how you feel it’s like the same old routine go to get help don’t get it try again never really getting answers

You got diagnosed but with no answers such penguin poop lol very frustrating

My whole family and friends think I’m coo coo my mom tells me its anxiety and I hyperventillated lol even when I’m perfectly fine it just seems eagles is not a good enough answer for seems like it has flair ups some dayd I can deal with it then others I can’t even get up I think inflamation in my neck makes it worse because my neck hurts I walk around with heating pads.I’m sure its pressing on sonething because when I’m sleeping if I turn left my left hand feels swollen and numb vice versa on the other hand so I try keeping my head facing forward

That’s exactly how I feel I dread doctors and I hate needles I throw a fit about going they are starting to destroy my veins its just so empty leaving with no answers and another perscription most time I throw them away trust me I know the feeli g of alienatef apparently I’m pushing everyone away because I think there’s something wrong with me

It really sounds like the styloid is compressing the cartoid artery which in turn would cut off blood supply to the brain I really have no medical experience but it might be the case

Serious it’s like are dirty little secret I went called 911 once 8 years trying to get diagnosed thinking I was gonna die or I might get the right medical attention ,got picked up in a ambulance but they sent me home later telling me I was fine l

Yeah I think so too but I don’t really know what to do about it as no doctor will take me serious

Didn’t u have the surgery and have them removed ?

Trust me I know the feeling I have said it also many times and I get frustrated why no one can figure it out I almost passed out in a kids play area with my kids and ambulance had to come and get me lol andddbthey sent me home telling me it was anxiety and high blood pressure lol I’m surebi looked so stupid but I’m too the point where I’m so fed up and could care less what people think as bad as that sounds

Ment once trying to get help, it sucks bad really making me cold it’s like Chinese water touture ,people wonder what’s wrong but no one wants to hear it ,I pinch my friends sometime to try to give them a clue but for us it’s like ,you could stopping pinching me now ok stop pinching me, wait its never gonna stop I just gotta pretend I’m not being pinched now and act like everything’s ok when it’s not .

Trust me I know I stopped talking about it and alk if a sudden its now really bad and every one is like I thought it went away but truth is no one can understand and me telling them about it they don’t want to hear about it . Thanks I feel a little better I might only cry once today from getting frustrated its like I’m waiting for answers or someone to find what’s wrong its just s big empty feeling especially when I have two kids and I struggle to even get up and do normal every day things

I’m tired of pretendng everthings okay abd outting a smile on when truth is I cant.even concentrate to what anyone’s saying .because I’m so dizzy I just can’t seem ti take much in then in embarrassing walking around stores trying not to fall over

Yeah I had it removed and it helped but still have symptoms I even went through a brain surgery last year ,After 15 ent I decided to see a brain surgeon to get checked for glossopharyngeal neuragial he took a brain MRI and said yes you got it pointed out a compression he thought he saw asked me if I’m ready to get my life back woke up from the surgery and was told he didn’t find the compression he pointed out ,I thought I was on to something since there is no answers with eagles thinking I might of found the cause for the growth haven’t seen a Dr since